Halo #5: The Redmond Family

(From - The Aunt)

Sean I just wanted to say that you and your family are truly special. My thoughts and prayers always seem to turn to you and I really hope they are helping. My sister is now in need of prayers and help.  I'm not sure if you are able to do anything, but prayers are always appreciated. Her 4 year old daughter recently came down with Necrotizing Pneumonia.  She is on the road to recovery but has permanent lung damage and will probably be in the hospital for a while. We were hoping she would be home for Christmas, but it isn't looking good. Her husband has had to take time off of work without pay, and their children have always been in such good health that they switched their insurance deductible to a higher rate just before Nora got sick. Again, I don't know if there is anything you can do to help them out. But if there is I know it would make this difficult time a little easier on them.

Thank you for all that you do, you remain in our prayers.

  

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(From - The Mom)

Dear Sean and Wendy,

I just wanted to write you a quick note while I have the kiddos in bed and I haven't joined them quite yet...we received your generous check today and we wanted to thank you again and let you know how grateful we are to be a part of Hailey's legacy. Your faith and generosity are an inspiration and a testament to your daughter's life and all the lives she has touched. When I have the chance, I am eager to write a little bit of Nora's story for your website, but I had to share something here for you that is unbelievable and a small miracle in my life: As I was talking to Sean last night on the phone, I mentioned to him that Nora and I found two shiny pennies on the street as we were getting into the car going home from the hospital, and how I immediately thought of Wendy and Hailey (I had been reading Wendy's blog for strength during our hospital stay). That story ended our conversation on the phone, and as I hung up, there on the bedside table, partially under the phone receiver, was a dime! Tails up! I couldn't believe it, and I am still in awed disbelief. Bruce and I were so grateful to hear of your offer to help us, but we were also humbled and wondering if we really deserved it. I truly believe that your daughter, through the will of Jesus, sent a sign to ease my heart and mind about accepting your generosity. What a fitting testament to the miracle of this Christmas season! We wish your family a joyous and blessed Christmas, and we will be praying for strength and joy to be showered upon you.

With grateful love.

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The Official Letter From the Redmond Family:

Dear Friends and Supporters of The Hailey Mayz Foundation,

Thank you so much for being so generous with your prayers and support!  Please know that your love for the Vassilaros family and your generous support of their foundation is so appreciated by those of us who have benefited from one of "Hailey's Halos".  Our family wanted to give you a little background on our daughter Nora and how much your support has meant to us.

Nora is four and in generally good health, but in early December, she became very ill with what we thought was the flu.  After a few days at home with a very high fever and typical flu-like symptoms, she suddenly began complaining of abdominal pain, so we rushed her to the E.R.  The doctors gave her a thorough exam and also suspected flu, but did an abdominal x-ray to rule out any bowel obstructions.  To their surprise, the x-ray caught a portion of her lung, which showed a pneumonia so severe that fluid was pressing on her abdomen and her right lung had essentially ceased functioning.  She was immediately admitted to the pediatric ward and treated with numerous I.V. antibiotics and an anti-viral medication.  After two days, however, Nora was not responding to any treatment, and she was transferred by ambulance to another hospital that had an I.C.U. and access to pediatric surgeons.  Despite the best care, Nora's pneumonia continued to worsen and was diagnosed as being caused by necrotizing staph, a severe bacterial infection that was eating away at her lung tissue.  Nora had a catheter inserted directly into her jugular vein to deliver heavy-duty antibiotics in an effort to stop the infection that was causing the pneumonia.  She also had a chest tube inserted in her side to drain the accumulation of fluid in her pleural cavity, which was not only severely compromising her lung function, but pressing on her heart.  For more than a week, the doctors worked to get both the infection and the pneumonia under control, but Nora's condition only deteriorated.  This was the most difficult time of her hospital stay.  Ultimately, doctors resorted to an antibiotic that is considered the last line of defense, and finally, after nine days, Nora started to stabilize.  She remained in the hospital for the better part of the next week as doctors monitored her condition, adjusted her medication, and prepared us to take care of her at home.  Upon her release from the hospital, Nora continued to receive antibiotics around the clock through her internal jugular catheter for the next ten days, then was on oral antibiotics for an additional ten days.  After five total weeks on antibiotics, the doctors felt confident that the bacteria had been eradicated from her system.  Though the staph infection is gone, Nora continues to recover from the pneumonia.  Even today, two months after her initial diagnosis, Nora's x-rays still show a significant pneumonia in her right lung, a pneumothorax (pocket of air) and pleural effusion (accumulation of liquid) in her pleural cavity, an area of abscess (dead lung tissue), and several areas of suspected abscesses.  We see improvements in her physical condition daily, but her body still has a good deal of recovering to do, and we do not yet know the long-term implications of her illness.  She is housebound until at least March because she cannot risk picking up any infections, especially the flu.  Despite this, she is acting like her old self again, playing with her brothers and sister, showing an interest in her toys and activities, and getting better day by day.

When Sean called us the day after we returned home from the hospital, and two days before Christmas, to tell us that the Hailey Mayz Foundation was sending us a gift to help out with expenses, we were so humbled and so grateful.  We were thrilled to have Nora home for Christmas, but her hospitalization and the severity of her condition had taken a toll on the whole family.  We had been apart for over two weeks since the hospital was more than an hour from our home, and we were scrambling to make sure that Santa would make an appearance for not only Nora but her older brothers Joe (9) and Tony (6), and her younger sister Alice (1).  In addition, a hospital stay of that length of time entails not only high medical expenses, but time off from work and additional travel and eating expenses that of course we did not budget for!  We know that the Vassilaros family knows first-hand everything that is involved in caring for an ill child, and their compassion and understanding of our situation was so uplifting and so appreciated.  Through their generosity, and the generosity of all those who have contributed to make Hailey's Halos possible, we feel that our family will be forever linked to the memory of Hailey and her legacy.  What an amazing testament to the life of a beautiful and much-loved little girl!  Thank you!

Happy Valentine's Day & An Epiphany

Happy Valentine's Day to my little girl!  Hailey's Place is so adorable right now.  It is the most decorated one in the whole cemetery!  I cannot believe how loved she is...not just by family, but by friends and even those who have never met her.  It's such a heartwarming feeling when I go to visit her and I find little knickknacks or notes left by someone else who also visited when I wasn't there!

Hailey's Place all decorated for Valentine's Day!

(That red string is attached to a red heart balloon someone left!)

Here are some cute pictures I took of the girls last Valentine's Day!

This week has been tough...really tough.  I'm not quite sure why, could be the whole 6 month thing, an exhaustion thing, or even just a hormonal thing (I know TMI), but whatever it is, it's been tough.  I've really struggled emotionally.  After having a wonderful chat with my mother-in-law, who's out visiting, I did come to the realization that I seriously need to slow down a bit.  


Ever since Hailey passed away I've kept myself so busy that I haven't really given myself time to truly grieve.  I have my moments of course when the grief piles up so much that I have no choice by to let it out, but other than those moments, I pretty much live as if nothing ever happened.  One of my dear friends told me after Hailey passed away that grief is one of those things you have to go through, you can't go over it, under it, or around it because eventually it will come back to get you.  Well, I have to say that she was right.  I'm not one to grieve outwardly, crying a lot or acting sad in front of others, which is both good and bad.  It's good because others don't feel afraid or sad to be around me...it's almost as if Hailey is still here when we're together.  It's bad because the emotion piles up inside and comes out in frustration, irritation, anxiety, impatience, etc...and it almost always comes out at the people I love the most and the people who deserve it the least (the emotional outbursts).  


So after chatting with my mother-in-law, who is a spiritual giant and a compassionate person through and through, I came to that realization of slowing down and allowing myself time to think, reflect, remember, rest, cry, and grieve.  I also think this will do wonders for Lexi too.  I keep her just as busy as myself, yet she is so much like me it's scary.  She needs some down time too,  for the exact same reasons as her mommy.  She loves to write letters to Hailey and make things for her and talk about her and visit her, so shame on me for not giving her the time to do that.    We're both exhausted emotionally, mentally, and physically.


I have to say that I'm grateful for my faith and spirituality.  It's the one thing that is not exhausted and has kept me going.  Although, I do really want to continue working on it.  I have a ridiculously hard time just sitting still and being.  And I have to say that I really do feel when Hailey is not around me.  When she's around I always feel this inner sense of peace and often hear that still small voice whisper in my ear that everything is going to be okay and that she is happy.  But when she's not around, I often feel anxious and lonely.  It's weird to explain, but it's true.  For example, on Christmas when I'm sure she was busy celebrating, I felt that she was so far away from me and I seriously struggled to survive that day.  And this last week Sean's grandmother passed away and I really haven't felt that sense of peace that tells me Hailey is around.  I'm assuming she just busy showing her great grandmother all around the joint!  Then there are the times when nothing I know of is going on up there in the heavens, but I still feel like she is no where near me.  It's those times that I've gotten on my knees and prayed for her to be near and that still small voice whispers in my ear, "Mommy, I'm here.  You just need to slow down to feel me and hear me."  Wow...now isn't that a far cry from the girl that she was!  When that child was physically here, she could yell louder than anyone or anything I'd ever heard...and let me tell you, she did it often...very often, like all day often!!!  But now she's a gentle, precious, little angel who can only whisper in my ear when she wants to be heard.  (She must seriously be going crazy!!)


So anyways, all that being said, I've had an epiphany that I need to slow down, be quiet, be still, and just listen and feel.  I miss my little girl.  

Halo #3: Sarah & Jeremy

(Names have been changed for privacy.)

From - Sarah's Friend

Wendy and Sean,

I have been following you on Facebook (I went to HS with Wendy) for some time now and also on your blog. I think you are truly an inspiration and an example of the kind of person we all should be!;) My heart goes out to you as a mother and also to your family for the loss of Hailey, she was such an angel I see and continues to be!

I just received the 2nd email from you all and your Hailey Mayz Foundation, and I have a special friend in mind to be a recipient. Her name is Sarah, and her son Jeremy is almost 3 and has Down's Syndrome. She is a very special friend to me, as she was a patient of mine and I took care of her for the 2 months she was in the hospital. She was admitted to the hospital after a routine visit to the Dr. and spent the next 2 months in a small hospital room on complete bed rest and flat bed rest for a good part of that time.

During her stay she was being very closely monitored and this is when she found out that her son may have Down's. When Jeremy was finally born, which was around 8-10 weeks early, he spent the next month in the NICU. Sarah is a single mother (from the time of Jeremy's birth), and she works hard as a tech at a local hospital, but I know is financially struggling! She cannot afford daycare, but needs to have the comfort of knowing he is in a safe place nearby. At this time, she drives an hour and a half every morning before work so that her sister can watch him. This is not ideal for her, but it's what she has to do for the time being.

She has a very unique situation because she does not have much family, her parents are gone and her brother is in the service, so it's just her sister that she has!:( With all her struggles, she is always such a loving person and is a WONDERFUL mother to Jeremy and she loves him with every inch of her being!  Not all young mothers would take this awesome responsibility of caring for a baby with Down's Syndrome and be able to do as fantastic a job as she does.

There is so much more I could write, but I hope your able to see a snapshot of her life. I also hope that she will be able to be touched by Hailey and all the wonderful things that have come about.   Thank You for your love and compassion for others, and for Hailey. May you have peace and Happiness in the New Year!

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 Wow! Thank You so much for choosing Sarah and Jeremy- they are so deserving!!! You and Wendy are amazing people and I am so Thankful for the both of you! As a parent, I cannot imagine the immense pain you feel for the loss of Hailey, but I really admire both of you for your strength, compassion, courage and faith to help you get through. My heart goes out to you, Wendy and your family. I hope you have a blessed holiday season and wish you all peace and happiness in the New Year!!! (((((HUGS)))))

Thank You again! I know this will make such a difference for Sarah and Jeremy!!!;)

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 THANK YOU to you and Wendy for open your hearts to others...I know this will make such a difference in Sarah and Jeremy's life!!! It's amazing how Hailey's precious little life can affect so many people and have such a profound impact! Although I never knew Hailey- she will forever be in my heart and I too am grateful for her and the compassion you and Wendy have shared with others! May you have peace and happiness and a Merry Christmas!

Six Months

Well today is the officially dreaded six month mark.  I wish I had something profound to write, but honestly, I don't.  To me it's just another day without my little girl.  I really don't want to make a big deal out of it because I'm at a strong point right now and don't want to lose that.  

I was thinking last night though about how much I've changed and what I've learned over the past six months.  So I'll share some of that with you:

• God will NEVER forsake me.  He has walked by my side and carried me like a mother carries her child for the past six months.
• I can survive anything.
• I am a lot stronger than I ever thought possible. 
• I have a wonderful husband who will stand by me through anything.
• My family is seriously the best.  I could never have made it this far without them.
• My friends are also the best.  I never realized how loved I was.
• I have some absolutely amazing people in my life.
• People will surprise you with their love, compassion, and generosity.
• I LOVE helping others through our foundation.  It's the best therapy ever.
• I would not have survived this or be where I am without my church and the beliefs that I carry.
• Hailey is still very much alive in spirit and one day we will be together again for eternity!
• My little girl loves me and is aware of me and sends me little signs all the time!
• Jesus Christ can really be your best friend.  You just have to need and want Him.
• Today's trial is tomorrow's testimony.
• Life can change in an instant, so be grateful for what you have right now.
• Try to be patient and compassionate with others, we never know what's going on in their lives.
• Don't judge how others grieve, it's a very personal process.
• I have more blessings in my life than I can count.
• Miracle do happen.

Although I would do anything to have my little Hailey back, that's obviously not an option at this moment.  So I have been really trying to make the best of this trial and come out on the other side a much stronger, much better person than I was before.  As I've said before, my goal is to see my Father in Heaven and Hailey one day with smiles on their faces and hear them tell me that they are proud of me!   

Thank you to all of you who have stuck by me these past six months.  I cherish every note, email, card, facebook comment, etc. that you leave me.  Knowing that I have so much love and support keeps me going.  It's true that many people do move on and forget, but it's also true that many do not.  And for those of you who have not, I am truly grateful and pray that you will be so blessed for your unconditional love and support.  You are truly angels of God.

Halo #1: The Roland Family

From - The Grandmother

(This is the letter the grandmother wrote to their family.)

Dear Family,

Miracles . . .Sara's and Zach's twins are now home. It's a full house with 3 generations living there, two dogs, and daily pediatric nurse specialists.

The twins have only hoodies and blankets to keep them warm when we take them to Hershey for frequent examinations.  It's getting much colder now.  If any of you have access to: 2 gently-used winter buntings that can be altered and snapped at the legs to be able to accommodate the car seats belts, it would be a big help.  I'm going to start looking at the Goodwill and Salvation Army stores by next week.  Also, Sara has only one crib.  She had bought a cradle last week for Connor, so Riley could use the large crib with all the monitors.  Connor moves and hits the bars in the cradle and is very fussy in it since the 'switch'.  If anyone knows of a crib for loan, or affordably priced, please let me know soon.  We appreciate any and all offers, and all your prayers and love.  God bless all. . have a wonderful Thanksgiving.  See you soon!

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From - The Grandmother

(Sean's mother asked us if we had any extra blankets for them, but we decided to give them a Hailey's Halo instead!)

Dear Sean and Wendy,

God bless your dear and eternal family!   Please know I'm still surprised and astonished at your generosity!  When I spoke to Sara this evening, she didn't believe me.  Forgive me, it's hard for me to find better words than "thank you".  Yes, your sweet Hailey is continuing to touch hearts with God's love.  That's her mission forever.  I'm better right now as I feel her presence in the love of God.  Thank you for helping Hailey to bless my posterity, too.

   

Love Forever

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From - The Grandmother

(A letter written to Sean's mother.) 

How do we say "Thank you"?  Words can't convey what's in my heart, and Sara's and Zach's!  Sara didn't believe me when I told her about the call from Wendy and Sean.  We're all very humbled and grateful.  God bless your 'gifting' on behalf of beau'ful Hailey.  She's busy, and will remain so.  The veil is so thin.  I'm grateful for that!

Riley went by helicopter to Hershey on Sunday evening, for his 4th emergency shunt operation; seems better at this time again, and might be home next week.  Sara and Zach are back and forth daily to Hershey and Mohrsville (because of Connor).  Zach's mom is a nurse and helps a lot, also the pediatric nurse is at the house daily.  When I'm not caring for my parents or tending other grandies; I'm with Sara whenever she calls for me.

I love you.

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From - Mom

Thank you so much for the generous gift! When my mom told me, I was speechless and wanted to cry, but then of course the pessimistic side of me kicked in and I didn't believe it. I read Hailey's story while holding a sleeping Connor, the littlest twin...and couldn't hold back my tears. We are so grateful for the gift. I'm glad that your family will be able to bless people's lives.

So many times different doctors would come up to us and explain how we had a 'very important decision to make', after we had already made our intentions perfectly clear. We were not going to give our babies up- they made it into this world, they deserved a chance at life.

Our twin boys were born at 24 weeks gestation. Riley came first at 1 lb 8 oz, 12 1/4 inches long. Connor followed weighing 1 lb 6 oz and 11 1/2 inches. Both were diagnosed with level IV Intraventricular Hemorrhaging (bleeding in the brain). They went through many complications and surgeries. Connor made it home in October needing only a Gastrostomy Tube (feeding tube). Riley came home in November with a Gastrostomy Tube, Shunt, Tracheotomy, and needing monitors. Both are at high risk for cerebral palsy but only time can tell. We're so happy to finally have our little ones home where we can watch them grow and give them all the love and care they need.

Since being home they both have progressed so fast! It's amazing what positive reinforcement and love can do. I'm grateful everyday for the little miracles we've been entrusted with. Riley now weighs 14 lbs 10 oz and Connor is at 10 lbs 8 oz and still growing. We've waited 7 months to have our boys home from the hospital, and now it seems like they've always been with us.

I'm working on sending you some newer photographs. Thank you so much for the donation. It touched us so much. It helped our little family. I think about you and yours and hope all is going well. I hope you have lots of support.

~Sarah

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 From - Me :)

I honestly cannot even begin to thank you all enough for making this amazing donation possible.  We have made it known to all these people that this money was not ours, but that of so many people who love Hailey and us.  I hope that you will all be blessed for your love, compassion, and generosity.  

Our sweet Hailey lives on through you!

The Hailey Mayz Foundation

(I know I already posted this, but I'm re-posting it because a lot of people missed it and I wanted it to be right before the first letter, which I will post tomorrow!)

As most of you are already aware, after Hailey passed away Sean and I decided to start a foundation in her honor to help others who have children with special needs.  Hailey LOVED to help others so we thought it would be the perfect way to keep her spirit alive.  This foundation has done way more than just help others...the healing and joy that we have experienced has been indescribable.  

Since so many of you have donated very generous amounts of your hard earned money (especially in such difficult economic times) I wanted to show you a little of where it's going.  I was raised writing thank you notes for every gift I ever received as a child.  I am so grateful my mother instilled that in me, and my goal is to one day send a personal thank you note to each and every single one of you who have donated.  I also want you to know that every single donation is appreciated more than words can express and every single penny raised will continue to go to special families in need.

We call each gift we give out a, "Hailey's Halo."  That name was created by the very special daughter of some dear friends of ours.  We absolutely LOVED it and thought it was perfect and most fitting!  

Sean is currently working on an amazing website that is completely dedicated to the foundation and all the information surrounding it.  Of course, I'll let everyone know when it is up and running.  In the meantime, if you'd like to make a donation, you can do so on the right hand column of this blog and also on Facebook by looking up The Hailey Mayz Foundation.

We do ask our recipients if they would be willing to write a little bit of their story and share some pictures.  With their permission, I'm excited to share some of those letters with you.  Before I do so, I'd like to let you know how you can refer someone who you think is in need of a "Hailey's Halo."  

Here is the criterion:

1. They must be a personal referral
2. They must have a child (children) with special needs

3. They must be having some sort of financial hardship

Please also include their contact info. 

So far we have given out 7 "Halos!!!" I decided not to post all the letters on one entry since I'm aware you all have lives and can't spend 3 hours reading!  So, on that note, starting tomorrow, I will post a new letter each day from those who have written.  (Just wanted to keep you in suspense!)

Thank you again for your continuous love and support.  I honestly would not be where I am today without it.  Every single comment matters to me and I cherish them all.

Rough Couple Days

Well the last few days have been really rough for some reason.  I've just been missing Hailey so much.  I've been holding back emotion for a few days now and finally had to get it out.  I've learned that's kind of how I grieve.  I go for a little while (a few days or sometimes weeks) feeling strong and doing well, then all of a sudden I feel my sadness start building up and building up until it finally boils over.


That's what happened tonight.  The last few days have been really slow and lonely.  I get bored really quickly now.  Life is so calm and mellow, which to some would seem great, but that's so not what I'm used to.  I'm a very anxious person so I really don't like loud noise and a lot of chaos, which Hailey did a great job of bringing around!  She just radiated loudness and chaos!  Of course, at the time, I used to get so freaking frustrated at her, but now, I would do anything to have that back again...anything.


So as the day went on, I could feel my emotions getting stronger and stronger and I just wanted so badly to break down and cry.  Lexi was so adorable.  I am very open and honest with her and try to let her in on my feelings.  I don't let her see me cry all the time because I want her to see me as she knew me before Hailey passed away and I also don't want to burden her with my grief and emotion. However, I do feel its important for her to see me cry at times so she knows that I have not and never will forget Hailey.  Plus, I think it gives her the okay to cry, too, when she's feeling sad.  Anyways, she went to Target today with Kim and bought me this little Tinkerbell journal from the dollar bin.  She was so excited to give it to me and even wrote me a note on the inside cover.  It said, "Dear: Mom this book is only for (dime stories, or stories about Hailey!) Love you! Love Lexi."  Then on the next page she wrote, "Dear Hailey, I found this dime at the _______."  Apparently I'm supposed to fill in the blank when I find a dime.  I seriously LOVE her!!  She also gave me her special necklace to wear that represents Hailey to her.


After putting Ava to bed, I decided to go for a ride in the car so I could be alone and break down.  I really don't show my pain or cry in front of people very often.  It takes a lot for me to go there, even with Sean.  For some reason, I just do better alone.  I didn't know where to go to be alone, so I just drove and ended up in the parking lot of Hailey's old therapy building.  She absolutely LOVED it there!  I would have to say that was probably her favorite place in the world to go.  Her therapists were amazing and Hailey always had a blast there.  We went there three days a week and I haven't been in that parking lot since Hailey died because it's so painful.  But since the cemetery was closed, I felt that would be the next best place to feel close to her.


I parked and sat there and just sobbed.  I talked to her and told her how unfair it is that she is gone.  Of course, I really never want anyone I know to truly understand what I'm going through and how I feel because of how horrible it is.  But on the other hand, it's tough because anyone who hasn't gone through it really doesn't have a clue of the pain it entails, which leaves me to feel very lonely at times.  Anyways, I then pulled up to the entrance and looked through the doors at the elevator we took up every time we were there.  I could just see her running up to push the buttons!  She loved doing that!  The memories and tears just flowed.


After a little while, my parents called me and we chatted for a bit.  I have to say that I am blessed to have two of the most amazing parents ever.  (Yes, and sister!) They are so supportive and have always been there for me...from the day Hailey was born.   (I mean before that too...)  I  just cried on the phone to them and finally felt strong enough to head home.  As I came around the corner in the parking lot, right there parked in front of me was a yellow jeep.  It sounds weird for a 3 year old to have a favorite car, but Hailey LOVED jeeps!  And according to my mom, yellow was her favorite color.  So yellow jeeps have always been another sign we've looked for.  Well there it was, sitting in the parking lot at 8:00 at night!  I just love my little girl.  She always comes through for me!


I feel much better now that I got it all out.  The rest of this week is looking up.  Tomorrow I have church, which always uplifts me and helps me to start the week off on a great note.  And my mother-in-law is coming out tomorrow night for a week.  I love her.  She is the most spiritual and comforting person to talk to, so it will be nice to have her here!


Until next time...